Hello!

General Blog
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Hello again!

This is my 5th time trying to blog.

My last post was in 2012. I was just getting on Simponi. I was on Simponi and Plaquenil for about 3 months and the disease went into remission - mostly. For 2 years now I have had nothing but minor flare ups!!

I have been lactose intolerant ever since I stopped MTX. It is not so much lactose related - it is a particular enzyme that is in milk products that causes a chemical burn sensation in my mouth and then inflames the tissue in my esophagus. Ice Cream, Kraft Mac n Cheese, Velveeta - all that stuff is permanently OUT of my diet.

I had a bout with my gallbladder which I am sure is unrelated, I have been to the ER twice now for that and they still aren't ready to take it out.

I have high blood pressure now. Probably more due to bad dietary choices. But I have been to the ER for that once because it hurt so very bad I couldn't breathe and thought for sure I was having a heart attack. (If you have experienced this please let me know. It feels like your arms, hands, and chest have been frozen and are thawing!)

I still have mini flare ups and just recently had a BAD one that lasted 3 days. It usually happens when the weather changes or the barometric pressure is high. It still moves around from different joints - shoulder, toe, foot, knee, sacrum, fingers, hands.

I have to go up and down a flight of stairs every day and I have noticed that even though it is hard, on days I don't do it I hurt worse.

I have had Flu now, two years in a row. Last year it got so bad I developed pneumonia. After 3 years of TNF Blockers my immune system was CRAP! It became a joke at work that I would get anything that came by. I started using OnGuard (dotterra) and started loading up on vitamin C supplements and I believe it is finally back to normal.

So alas, my advice is stay away from MTX - unless you have leukemia. Make sure you have an icepack on hand at all times. Invest in pressure gloves for your hands and ankles - they really help! Get your flu shot EVERY year and protect yourself by utilizing Purell. And most of all, push yourself to MOVE somehow because it will hurt worse if you don't.

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You are definitely right, Suzanne, when you say keep moving! I'm pretty sure there's a connection between not moving and more pain. Even my feet, which have extreme OA damage in the top joints seem to hurt the worst after I sit for any length of time and then try to walk. The pain is almost unbearable at first.

Sorry to hear about your heart issues and the lower immune system and flu.My white blood cell count is on the low end (I take Enbrel) and I've become a real germaphobe. I worry about catching everything--and I've really noticed lately how rude some people are when they cough right in my face!

I do get the flu shot and if I feel a cold coming on I delay my Enbrel shot , although last winter delaying my shot a few days didn't stop a couple bad colds. Luckily, that's all they were is colds--no fever--just cough or sinus congestion that lasted 5 weeks. But, I have heard that people on biologics can get seriously ill from just a cold, so it's something to keep in mind! Always something to worry about.

That brings me to stress--I've noticed when I'm really stressed about something, I feel more generalized pain. Do you notice that, too? It happened to me yesterday when I was trying to make a decision about health insurance (the deadline is tomorrow and I haven't decided yet!) I became so upset I actually had pain and my psoriasis started itching more!